First loading dose of Remicade is done

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LJS

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Feb 26, 2013
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First loading dose of Remicade is done ... update

We went in on Friday for my son's first loading dose of remicade. It was nice, they put us in our own room...the hardest part was getting the catheter in...they poked and poked and my son was crying so hard...they moved to the other arm and got a smaller catheter (one for babies) and that worked much better. From then on, smooth sailing.

Love our Children's Hospital. My son got to order a meal off the room service menu, which was all included. I could order in as well for an $8 charge or go down to the cafeteria and pick something up. He had an xbox in his room, so he just played games the entire time. Didn't use the ipad, kindle fire, etc that I brought with me.

He was tired that night and really tired yesterday..felt a little sick yesterday but I put him to bed at 7:30 and when he woke up this morning at 8, he feels good. No noticeable increase in appetite yet, but that is ok! Overall, a much better experience than I expected! Hopefully the results will be great!
 
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Glad it went well other then the IV issue. Yes Jack was tired that night and first day after first infusion. This last one he was bouncing off the wall with energy, well see what the next one brings on the 20th.
Hope his appetite picks up, maybe he was just too tired and he will be eating you out of house and home today :)
Jack would love if there was an xbox but since it is done in his GI office they don't have a lot just a portable DVD player.
 
So good to hear that all went well...once they got the IV in! :ghug:

Good luck, I hope Remicade proves to be magical for your lad.
emoticon_magic.gif


Onwards and Upwards!

Dusty. :heart:
 
What great news! So happy it went well, minus the poke.

My son is given the choice of a j-tip or Emla creme for the poke. Might that be an option? The other thing we learned yesterday was that when he holds his breath, the veins disappear, so make sure he isn't doing that... maybe make it a game, ask him to whistle or something.

The other thing is lots and lots of fluids the day before and day of to plump up those veins.

We have had a different nurse every time, so if you find sometging that works (the smaller needle), have it written in his file.

Next appt in two weeks, right?
 
They won't let us use the EMLA cream..said it causes the veins to hide..never had that issue in the past...I'll bring it with me again and try next time.

Actually, I have a little secret.. I take the nurses to the hallway and ask them to put something on and pretend it's fast-acting numbing cream that you can only get in the hospital..LOL. My son says it works, the nurses laugh, and all is well...LOLOL

Next appt is in 2 weeks, yes...so far, so good!
 
It was a couple of days for us, loading dose on Thursday, Saturday dinner ate 2nds and asked for breakfast on monday
 
The next day. We were in the hospital and I had to run out and find gluten free food since the hospital cafeteria was limited.
 
My daughter only experienced a slight loss of appetite with her CD but I just wanted to pop in and say that while Remi works really fast for some for others it is a slower process. The improvements could be slow and not dramatically noticeable day to day. This was the case with my daughter and I dare say it really took a few months for us to see noticeable results. Hang in there! Hopefully the will draw labs at the next infusion and be able to give you some answers on whether or not the bloods are moving in the right direction.
 
I'm so glad we started...my son had labs 2 weeks ago and his sed rate was 39. On Friday, before remicade, it was up to 58..yowza!
 
No, it went up from 2 weeks ago! Yowza!! Hopefully, by the time the 3rd loading dose comes around, we'll see some improvement.

What this means to me is that his inflammation really is taking off, and I'm hoping that remicade is our magic bullet!!
 
he feels great..but he typically always feels great. I am seeing a slight increase in appetite. so we'll see!
 
My son had his second loading dose of remicade yesterday. This time, they increased the speed of the drip...135 ml/hour..so his loading dose was done in 2 hours and we didn't have the waiting period afterwards, since he had no reaction the first time. Third loading dose should be the same, then afterwards we go to rapid-infusion - between an hour and an hour and a half..

While he's had only a marginal increase in appetite in these last 2 weeks and no weight gain, his labs are showing great improvement. His sed rate is the lowest it's ever been, at 26 (down from 58 2 weeks ago!!)..so that is great news.

He's super tired and achy today so home from school and will be back in the swing of things tomorrow..

Lin
 
Glad things are moving in the right direction :) I've been reading that for many it takes a few infusions for things to really turn around so I'm sure the weight gain and appetite will increase.
We had the rapid infusion on the last one and we were there for a total of 2.5 hours but then we always have a 1/2 GI appt. at the beginning since it is in his GI's office. It's a nice little check in for us.
Hope the rest of the week and the next 4 until next infusion are smooth sailing.
 
Also be aware rapid infusions can increase the risk of reaction so sometimes they need to slow it back down again.
 
My son went for his third loading dose yesterday and had his sed rate taken before the infusion.. so 2 infusions in and his sed rate went from 59 to 18 in 2 infusions!!!!!! Woo Hoo!! Could not be any happier!!

My son still gets extremely tired from the remicade but it really seems to be doing the trick for his inflammation!
 
I'll take tired and 2 lbs heavier and 40 points lower on his sed rate any day of the week..LOL
 
Woohoo! Fab update LJS!
cartwheel.gif


And may the good results just keep coming! Good luck!

Dusty. xxx
 

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